The unique experiences of raising a brain-injured child and her two brothers.

Thursday, February 23, 2012

Night and Day

Romans 8:28:

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."

I can’t think of anything more opposite than night and day. One is quiet, the other full of life. The moon watches over our sleep, and the sun welcomes us awake. The night creates dreams, leaving reality for the light of day. Our first night with Elise proved to be the complete opposite to the next day’s discoveries.

Immediately after Elise’s birth, the mood of the delivery room was uplifted at the sight of a healthy, breathing, pink little baby girl. The doctors and nurses that were there to help with the predicted chaos quickly dispersed and left us with just the ones needed to assist with the normal delivery aftercare. Many babies with CMV are born with an enlarged liver or spleen, a rash on their body, underweight, or even deceased. Elise’s entry into this world was glorious for us all. She looked great, breathed great, sounded great, and surprised everyone! Even the doctor came over as they were preparing her for my arms, and told me, “Maybe your mom was right all along. She very well may have been healed.” (We fervently prayed for Elise’s healing during my pregnancy. My mom always told the doctor that she would be healed.) To hear those words from the doctor that gave us such a grim prognosis during my pregnancy was shocking and hopeful. As a matter of fact, someone took a picture of my mom that night, kneeling down on her knees in prayer, thanking God for what seemed at the time to be a true miracle. Unlike most CMV babies, Elise avoided the NICU, and went with me in my arms as they wheeled me to my room. She didn’t need any special care at that time. We were free to spend our first night as mother and daughter, side by side in my hospital room.

As Chris settled into the uncomfortable pull-out bed that barely fit his tall frame, I readied myself for some one-on-one time with Miss Elise. The one thing I remember, as vividly as if it were yesterday, is how I sang to her. I pulled out all of the sweet songs that I lulled her big brother, Lane, with not so long ago. “Amazing Grace”, “Jesus Loves Me”, and “Hush Little Baby” were just a few. In spite of very little sleep while sharing the night with my hungry, crying, wriggling newborn, I was in heaven.

The rising of the sun on that next day would mean a new world for me and my family. The world we had initially prepared ourselves for, but took a pause from for a few short hours. A nurse took Elise for a newborn hearing screening, and kept her for what seemed an inordinate amount of time. I remember asking Chris to go check on things several times. He would leave and return with the reassurance that they were still testing. No big deal. My room was filled with family and friends, and we had enjoyed an afternoon of laughter and doting over baby Elise.

What happened next was a quick and agonizing moment. A nurse came in to share results of Elise’s test. Her words cut through the room like a knife, and left my heart bleeding openly for all to see. Chris quickly cleared the room and came to my side, crying aloud with me. From that moment on, life was altered. Elise was not perfect. In fact, she was completely deaf.

(Of course, at this point, we had no idea of the shocking revelations to come including her blindness, CP, epilepsy, and severe cognitive delay.)

It was if I had lost her twice. Once with the original realization of her brain injury during pregnancy, then as she was ripped from me again when told of her reality that day. What started as a fantasy turned into an ugly reality. I had been full of joy, but now felt depleted. The night had been bright and the day was now dark.

It’s kind of odd. Typically, night is when things feel worse. It’s more mysterious and threatening. The beginning of a new day is when things feel better -- brighter and more inviting. My experience was definitely reversed. Our night was filled with peace and serenity. The day brought chaos and felt like a nightmare. This experience was, in a very literal sense, a version of night and day. By night, she was healed - perfect. By day, her problems came to light to forever change our lives.

We allowed ourselves one really bad, terrible, awful day. I cried until my eyes were almost swollen shut. We grieved hard that day. However, we were never angry or irritated at God. I never wasted any time questioning why she wasn’t healed, or how this could happen to us. Was I disappointed that God, in fact, did not heal Elise? Very. Did I want to run from the hospital screaming in terror? Yes I did. But God had been working on me from the beginning. My prayers had not only focused on her healing, but they also called out for an acceptance for what was to come. I wanted to be sure that I was prepared to face what awaited us. Ever since I can remember, it has always been of great importance to me that I know my faith and love for Jesus wouldn’t diminish in times of need. With this first realization that Elise was deaf, and with many more soon to come, this was definitely my time of need.

So, God didn’t heal her. What next?

Well, we may have lost our composure, but we didn’t lose our faith. We just shifted our focus. We would now concentrate on praying for strength, our marriage, patience, and perseverance. This would definitely not ruin our lives or our trust in Jesus Christ.

I had already found God as a child years before, but only now was I able to realize that I had not yet fully relied on Him. As it is written in my all-time favorite hymn, “Amazing Grace”:

Amazing Grace, how sweet the sound,

That saved a wretch like me.

I once was lost but now am found,

Was blind, but now I see.

The doctors may have opened my eyes to Elise’s true situation, but I needed God to open my eyes as well. Only until I could see who Elise truly was, could I then also see my immense need for Christ. I was going to need to fully rely on Him, lean on Him, and trust in what He had in store for me and my family.

I looked to this 4th verse of “Amazing Grace” that is less known:

The Lord has promised good to me.His word my hope secures.He will my shield and portion be,As long as life endures.

How could I respond in a way that this bad situation could be used to accomplish the will of God in our life? I had to decide that this massive disappointment may be a major drag, but I wouldn’t let it drag me or my family down. Yes, we remain disappointed. I look it straight in the eye every single day. But, I do not let it rule my feelings, my actions, my words, or my love of life. I want to magnify and glorify the Lord through my attitude.

I learned an enormous and very useful lesson that day. Disappointment doesn’t have to define you after a crummy experience or new heartbreaking reality. If you stop to think about it, so much of life is night and day, resulting in unavoidable disappointment. One part of your life may be in stark contrast to what it once was, or what you expected it to be. Relationships, financial standings, health, career, even your walk with God. Choosing to forego feelings of unfairness, anger, and depression isn’t easy, but it is necessary for the preservation of the kind of life Jesus has for you. For me, it was the giving away of myself for Him and what I knew He expected that carried me through.

The sunrise of each new day from then on proved glaring, shining a bright light on Elise’s true afflictions. In the ensuing weeks and months, we would come to know of a multitude of additional struggles and disabilities Elise faced. But with each day, the disappointment faded, leaving room for acceptance, joy, and a renewed faith in what Jesus can do even in the face of overwhelming sadness.

Yes, it was a night of ignorance, but it was also a night of pure bliss! I sure am grateful for those few hours that I was given to spend with my daughter under the shroud of night. Even though she didn’t hear my songs, I did. She didn’t see my blurry image in her newborn eyes, though I definitely saw her. I guess that night was mainly for me. The night that I delighted in Elise for what I thought she was. A night that I will always treasure in my heart, tucked away just far enough to be thought about and pulled out to the surface whenever I want to remember what it was like to have a healthy, perfect little baby daughter who defied all odds and proved the doctors wrong. The truth of it doesn’t even matter now. Somehow, in my mind, that night did happen--if only in my dreams.

Thank you, Lord, for giving me the gift of that unforgettable first night with my baby daughter, Elise.

(If you want to learn more about Elise, feel free to browse my older posts by scrolling down, or by looking at my blog archive on the left of the page.)

Keeping a positive attitude leading up to Elise’s birth. I knew that she could be born with any number of problems, or even die. I was still excited to meet her and finally hold her in my arms.

My family was so excited and relieved to see that Elise was born looking very healthy and normal. It was obvious that she had microcephaly (small head due to less brain growth), but she looked great otherwise!

My mom (GiGi) kneeling down on her knees after Elise’s birth, thanking God for her life.

Elise and me on our first night together...

Children’s Hospital in downtown Dallas quickly became our home away from home once Elise’s issues came to light.

An interesting picture of Elise in a crib surrounded by doctors at Children’s. Not the image I had in mind for her our first night. I have become accustomed to the many questions, tests, procedures, and plain medical curiositythat have become such a large part of Elise’s life.